Evie’s weight has been a source of constant struggle since her NICU days. She, like most other CHARGErs, needs a much greater amount of calories than a typical child in order to grow. Couple that with the constant gain/lose cycle of sickness and you can imagine how much of our time and energy is put into simply making Evie grow.
Currently Evie gets a combination of breast milk and what’s referred to as a Blenderized Diet. This is basically real whole foods blended with a high powered blender to make them thin enough to go through her tube. She gets three ounces in volume every two hours, seven times a day. Three of these feedings have blenderized food in them and the other four are breast milk with coconut oil. This is her day:
|6:30am||3 oz breastmilk + 2 tsp coconut oil|
|8:30am||2 oz veggie mix + 1 oz breastmilk|
|10:30am||3 oz breastmilk + 2 tsp coconut oil + 1/4 t cod liver oil|
|12:30pm||2 oz meat mix + 1 oz breastmilk + 1 t gelatin|
|2:30pm||3 oz breastmilk + 2 tsp coconut oil|
|4:30pm||2 oz veggie mix + 1 oz breastmilk|
|6:30pm||3 oz breastmilk + 2 tsp coconut oil|
This schedule puts her at about 967 calories per day and roughly 115 calories per kilogram of weight (typically at this age, children are closer to 90 calories per kilogram). Her meat mix consists of a beef roast done in the crockpot and either chicken or beef broth. Her veggie mix is a little more complex. The latest mix makes enough for about 2 weeks (as she gets 4 oz/day) and looked like this:
Because Evie can’t just eat when she’s hungry, we have to be very diligent to make sure she has enough calories. This was a very difficult change for me, having breastfed our older daughter on demand and done what’s known as Baby Led Solids (Baby Led Weaning). I don’t even watch calories for myself and here I am forced to regulate my child’s intake.
We have to keep Evie’s volume per feed very low so her normal coughing to clear her trach of secretions doesn’t trigger vomiting. We went through a very rough time where she threw up with almost every feed. I think there’s a little post-traumatic stress for Ty and I from those days (not to mention her NICU days!). Watching your child throw up over and over again is hard in and of itself, but with the added fear of vomit getting into her trach (and then leading to pneumonia), we were constantly on edge. By limiting her volume, the vomiting has lessened, but it has made it difficult to get in enough calories. We had to eliminate overnight feeds fairly early because Evie does NOT lie still while sleeping. She yanked her gtube out at night just 3 weeks after coming home which started off a horrendous seven weeks of ER visits, trying to figure out what was wrong with Evie’s gtube. It turned out the balloon on the inside of her stomach to hold it in was getting sucked down into her intestines, blocking off any escape of gas, shooting her food straight into the intestines rather than the stomach, and causing her to throw up blood and stomach juices all day while she laid lethargic on the couch. Our doctor had only ever seen that happen once before! We switched her to a different style gtube and that has resolved the issue.
Since Christmas, Evie has been at almost a complete standstill in her weight. Every time we’d weight her it was the same.
18 lb 7.5 oz.
We’d try a few days later.
18 lb 7.5 oz.
I tried increasing the amount of coconut oil in her breast milk feeds.
18 lb 7.5 oz!!!!
It was maddening and a constant weight (slight pun intended) on my shoulders. She MUST gain weight in order to have the surgery on her trachea down the road. The only thing holding us up right now is her tiny size. She doesn’t have any fat reserves to help her during the difficult recovery. We tried switching her reflux medication, hoping this would allows us to go up in volume, but only to have her throw up an entire feed when I tried to add just a bit more. Still: 18 lb 7.5 oz. We now assumed that the lack of weight gain was due to her working towards walking (and maybe hopping around like a frog!) and just burning up more calories. So back to the drawing board to see where we could add more calories without making her vomit. I decided to add in an ounce of coconut milk to one of her usual straight breastmilk feeds to see how she took it. Success!
So you’ll understand why, when our nurse weighed Evie yesterday and came out to say, “18 lb 12 oz”, I broke down in tears of happiness and relief. It seems like such a silly thing to the rest of the world, but for us, those 4.5 ounces were beautiful!